Living With a Body That Won’t Follow the Script

Notes on lipedema, fatigue, biology and trying to build a life that still works. Even if I take a break from lipedema, the lipedema doesn’t take a break from me.

This is a reminder for anyone living with a chronic illness and doing the work of trying to build a better life, day after day. Strength has very little to do with speed, distance, or how much weight you can move. It has even less to do with winning, being right, or having all the answers. Real strength is being able to look for a bit of light when everything feels dark, holding on to what you believe in when you’re exhausted, and facing the truth even when it is uncomfortable.

Lipedema sits at the intersection of biology and lived reality. At its core, it’s an exaggerated version of a mechanism that normally protects the female body. Estrogen-driven fat storage around the hips and legs has always served a purpose—energy reserves, hormonal stability, fertility. But in lipedema, that protective system overshoots. The body keeps “protecting” long after protection is needed.

When that happens, the whole environment of the tissue changes. The fat grows, but the function breaks down. Oxygen levels drop. Inflammation takes hold. Hormonal signaling becomes self-reinforcing. The estrogen receptors in the tissue start sending mixed messages, and the imbalance locks the tissue into a state of ongoing repair. Over time, the connective tissue stiffens, circulation weakens, and the inflammation becomes part of the landscape. What was meant to be temporary turns into a loop the body struggles to exit.

I try to approach daily life with an 80/20 mindset: I aim to do my best most of the time, and I allow the other part to be simple enjoyment without pressure. I try to keep steady habits around food, exercise, and how I divide my time between work and the rest of my life. I’ve also added a few routines that help me manage stress—yoga, sauna and cold dips, being outside, playing golf with my partner, spending time with family and friends, and travelling, which always gives me a sense of perspective. Learning new things gives me energy, which is probably why I spend so much time trying to understand lipedema. Some days I feel completely finished with reading and thinking about it, but then I remember that this is a condition I carry with me every day. Even if I take a break from lipedema, the lipedema doesn’t take a break from me.

I’m grateful to everyone who supports my effort to make research on this condition more accessible.